THE INVISIBLES & THE VANISHED

There are those of us that have a hidden secret.

To look at us it would never occur to you that there was anything there, no different to early stages of cancer, but just like the killer disease it is there. We know this. Because we feel this. All the time.

But to a number of public services the government wanted to save money with they decided that everyone in the UK is stupid and that they could go after these people and that because you cannot see it, it would appear to not be there. Other simply would not care .. as long as their taxes go down and I have stated over and over again .. taxes only ever really go up. Certainly in the long term.

How many years have we been at this now? Seven? Eight?

Wow .. it has really done its job, has it not? We are well free of the financial troubles .. oh wait? I think Vince Cable just said in a little speech that things have been getting worse and about to get worse? Crime has gone up by its largest amount. Exactly as I stated it would. The savings and kicking in the groin of disabled people has done absolutely nothing. Even with over 100,000 people dying as a direct result of that kicking (Google Calum's List) they still have not done anything.

I stated, when David Cameron first announced Welfare reform, that I was all for it and behind him when he stated it was fairer and provided that was his intention. But I also stated that I could not but feel that he was just going to create a craftier way of going after people with disabilities that was even worse than that of Tony Blair?! I just could not shake that feeling and I was around 80% convinced they would go after even more conditions of the list of disabilities and I was right.

If your on a list of disabilities and that condition is a registered disability then that is that. It is not called a disability when you can actually walk and get around normally just like everyone else. It SAYS disabled because it MEANS disabled.

Except when your a Tony Blair government or worse still, a Tory Party government.

Well the number of people that have died have exceeded 100,000 some time ago now and they show no signs of slowing down.

They are doing this for the good of the country.

Funny that as I thought the country was the people of said country. Without any people a country is just a land mass. Well that is my train of thought and always has been.

So they think the best way to help the country is to actually very deliberately go to the weakest section and either make their lives a fucking misery for years and years with the hope they will kill off a few hundred thousand and therefore reduce said bills?!

Yeah that seems to be working out just fine and dandy, does it not?

Let us forget about a knee problem I have that was spotted, tested and diagnosed by the very same Guy's Hospital Doctor/Specialist that diagnosed my Fibromyalgia .. I have Fibromyalgia.

I also self-diagnosed that Fibromyalgia long before I had it confirmed at Guy's Hospital.

Well .. except .. I had been nagging General Practitioners and hospitals about it for over 13 years or more. Let us look at the tests and the departments I went under ..

Departments

• Rheumatologists x 3 (Whipps Cross, Wanstead, Guy's)
• Podiatrists x 2 (Forest Road Med Centre, St Michael's)
• Orthopaedics x 2 (Chase Farm, Barnet)
• Bipedal Mechanic (St. Michael's)
• Foot Specialist (Barnet Hospital)
• Lots Physios that did nothing (Wanstead, Whipps X, Chase Farm)

Tests

• Tarsal Tunnel Syndrome
• Nerve Conduction Studies
• X-Rays .. at least twice on feet alone

Condition Drawbacks

• Half Dozen to Dozen or more areas or more of pain
• Can include several areas of pain in feet including Plantar fasciitis (IN REVERSE!)
• Short Term Memory Loss
• Body Temperature Regulation bad (either trouble with cold or heat)
• High Blood Pressure
• Fatigue
• Sleeping is crap, can have periods of insomnia that last for months on end
• Nervous Breakdowns from stupid things
• Rubber Leg Syndrome
• Restless Legs Syndrome
• Restless Arms Syndrome, yes look it up!
• Uncomfortable lump feeling under arms when wearing clothing
• Tightness in skin over breast plate
• Skin conditions in several areas of body (I have 4 but feet have started to have .. signs)
• Possibly causes my Postural Hypotension (not good when you have abnormally high BP sometimes over 200)
• Chest Wall pain (you really don't want that) could be caused by Fibromyalgia
• Could be behind my back pain or it is a knock on effect

Except if you look at me I am fairly fit and muscular ..

Because light exercise or exercising parts that are not hard can reduce the symptoms frequencies and intensity.

I keep looking up at those different bullet points and I know I am not recalling things. That test section I am sure should be over double that length .. oooh X-Rays, lol.

A brother phoned me recently and stated that Fibromyalgia has now been declared as a long term illness, which is odd as the NHS nor the DWP have contacted me about this.

I am having a hard enough time getting anything out of a solicitor who is supposed to help me out with this, the disability side which could make or break me becoming self-sufficient over the next year, see upcoming post about that called 'The Last Days'. They really will be the last days as it has now been confirmed. Kinda. Lol.

Anyway after being told this about Fibromyalgia over a week ago I finally remembered I needed to 'google it'. I only found a BBC report that stated that Fibromyalgia has been declared a long term disability in Northern Ireland?! Getting closer. Lol.

As I said I try to exercise because deep down this condition terrifies me. Because I have been told by a specialist that you can end up so bad you are bed ridden. The light exercise and the pacing is the key to stopping this from destroying your life completely. Bloody hell I even saw a Paralympian, I think it was, in a BBC report that stated they had to crowdfund a damned wheelchair!

What we actually have is a society that is behaving like that as they did in Medievil times but are trying to hide this fact. Where they weak die off and the strong, and those with money, survive. Good attitude that. So why even bother having hospitals at all? I mean all hospitals, I really do and I mean private ones too. I mean if the attitude that the weak can die is OK then it should apply to all, am I right?!

How much of a negative effect all this has had on medical research, God only knows!

I still maintain that Chroniic Fatigue Syndrome, Fibromyalgia Syndrome and Chronic Regional Pain Syndrome are actually one and the same thing. Just different levels of the condition when it comes to pain with CFS being the early stages, FMS being the mid stage and CPRS being the extreme stage.

There just seems to be too many similarities between them, outside of severity and a few symptoms, to just be coincidence. So much so that I have wondered for a few years now why this has not been spotted or even suggested by anyone in the world of medicine? Have they just missed the obvious or are thy deliberately letting them be classified differently?

Although it was somewhat .. complicated I do know someone that was refused both DLA and PIP despite having quite bad Chronic Regional Pain Syndrome. Yeah did not look good for everyone else with these nasty conditions.

Fibromyalgia Syndrome Declared a Disability in Northern Ireland ..

http://www.bbc.co.uk/news/uk-northern-ireland-37424804

In America ..

http://fightfibromyalgia.net/fibromyalgia-is-declared-as-a-new-long-term-disability/

Some get help .. some do not and those that do being kicked off disability one by one in the UK ...
A Forum of Sufferers ..

http://ukfibromyalgia.com/forums/viewtopic.php?f=11&t=13756


Now what did I say only recently and have stated for five years now? I stated that they are not ignoring the obvious ones, the NHS & DWP, but ignoring the less obvious as well as going after them!

But, hey? As long as they look good, right? As long as they save money and get the UK out of trouble, right?! Except they have been doing this for years, successfully kicked me off twice now.

"Targeting those with invisible disabilities undermines the fairness of benefits reform" - Telegraph

http://www.telegraph.co.uk/news/2017/02/28/targeting-invisible-disabilities-undermines-fairness-benefits/

THE WORLD OF CHRONIC

I was up early once again.

I was sitting here is a kind of panic mode as from today I am responsible for a load of animals tha I kept telling someone I did not want to be.

So what happens on the very first morning I wake up to this unwanted responsibility? My back is in considerable pain for the first time in weeks and I still have the shooting pain in my right foot I first felt yesterday and one reason why I did not leave the house.

So I was sitting here thinking about that and how it is the the DWP can be so cold and evil towards other human beings, David Icke – cough, and I thought I would look up a few things with my condition.

I came across an interesting line that made me wonder ...

A diagnosis of chronic pain is associated with increased mortality due to a variety of external causes. - Mark Borigini M.D. https://www.psychologytoday.com/blog/overcoming-pain/201101/fibromyalgia-and-death

Might explain a few things that I keep thinking will take place, intentionally or otherwise.

Then I stumbled across several sites that had lists of celebrities that also suffered with my condition and some of them, Janeane Garofalo the actress in particular, were shocking. Oh and the first time I saw Janeane Garofalo I simply melted. Not often I do that and was a few years back now. Not seen her in years.

Do not know her? How about Nicole Chilelli (not sure who she is but cute), Brittany Murphy (actress), Rosie Hamlin (singer), Sinead O'Connor, Jo Guest (mentioned previously), Cher, Paula Abdul, Michael Crawford, Morgan Freeman (he says from car accident too) and Florence Nightingale?

A couple of other little known names are Tobey Maguire (Spiderman has FMS?!), George Clooney (CFS), Jerry Lewis, Stevie Nicks (Fleetwood Mac) and John F. Kennedy. Wait, what? But up until just a few years ago Doctors kept stating it did not exist?! LMAO!

There is a whole list of American celebrities that Brits coming here would probably not have heard of so I will include a few websites for those interested in looking ..

http://jensfibrostory.blogspot.co.uk/2013/04/celebrities-with-fibromyalgia.html

https://www.pinterest.com/shirmason/famous-people-with-fibro/

My word. Many of those were shocks and I was not expecting to see quite so many. I thought it would be a very short list of four or five people but I am sure if I carried on looking I would have found many more?

So then … five weeks of living in the darker pits of hell than I normally do starting from today and with me panicking that nothing will go wrong! Marrrrrvellous!

I am going to have to get used to using my bike a lot more than I have as being on foot for the amount I will be busy? Wont happen for very long, a few days and I will be a wreck. I hope it does not go on and cause any anxiety as I will not be a happy man .. literally.

I might even be forced to drag my secondary bike out, one I can use to do shopping with as I feel OK about locking it up. It may well be the only way I get through this, especially if I find days with more than one place I need to be it will be a must.

It is funny how the world can be going crazy around you but you have to keep on doing mundane crap? While at the same time having nothing to do for even a day drives you almost insane?

For some reason and for several months I have been losing my drive too, which does not help when you having difficulties thinking of something to get out and do for fear of staying in and going insane.

I very seriously need to lessen the number of days I do mundane things and I need to get out and do the things I find interesting and relaxing. I also think I need to find other things to do that I find interesting. Like attend some weekly event with like minded people in any one of the half a dozen or so things I am knowledgeable in?

Funny how no matter how I look at it I need a damned car! Always at the back of my mind for several years all I have thought it how much easier things would have been and how much quicker I would have reached my goals had I still had a car? But it is just too much of a major headache to run a car on a minimal income, if of course you could even call it an income?

There is no way on Earth I would ever …. EVER come back and live my life over again. No bloody way!

Lol.

THE FIBROMYALGIA MERRY DANCE

I found this Homeopathic site, sorry but I very much doubt Homeopathy would be of any help at all with this when 90% of the drugs I have had do not work! Lol!

Interesting to note is how Fibromyalgia is stated to be very varied from patient to patient. But then as I have written about before there are in the region of 200 symptoms listed and I think this could be more. Because its a scrambled pain signal and this means that just about any symptom can be ... mimicked.

I myself have pains that are the opposite of Plantar fasciitis in that the symptoms become worse with use and not better. This is an extremely horrible and debilitating condition to have from day one and one Rheumatologist told me that he felt sorry for me and that people simply will not understand or accept how bad this is. He went on to point out that the pains are to do with the bottoms of my feet and that as soon as I get out of bed I am on my feet and like this until I go to bed! Then there are sudden stabbing pains in arches and metatarsalgia in left foot. Middle toe on right foot likes to play silly buggers and lock up?! It also has an inverted joint in that it can bend backwards and not downwards and it bends backwards during the process of it locking up. Collapsing to the floor and waking up screaming and losing the ability to speak is how it affects you. God I hope too many people do not have that one?! Scared the crap out of several people in the middle of the night that one!

Oh did that turn out to be so very true indeed!

Then there are my ankles, calf muscle lock-ups, knees (thought right is possible torn meniscus but definitely something separate and not listened to that damned tape ... STILL).

Thighs became a problem lately with intense aching now stopped after taking Gabapentin 300mg, Sertraline 50mg and Amiptriptyline 25mg last night.

Then its the hips which lock up or just ache sometimes when out.

Then there is the entire back though mostly mid and top half of back.

Shoulders freeze up and get very sore of carrying shoulder bag.

Neck. Plus aching in right hand.

That is the painful areas of FMS I hate the most!

then there are the distracting and irritable things like a itchy eyebrow on my right side that bugs me like crazy at night. Restless Legs and Arms Syndrome which I do have control of I just have to avoid caffeine but thats not as easy as it sounds. I have noticed that 90% of the drinks in a store all contain caffeine and this shocking includes Lucozade! One drink I love I have to avoid along with Coke, Dr Pepper, Red Bull and all similar energy drinks like my beloved Monster!

What your left with is water, yerrr not paying for water thanks, and the natural and promoted as good for you drinks with one with Blueberries in and I should be drinking twice daily costing two pounds bloody fifty for less than 330ml?!

I do love Root Beer but hardly anyone does it, store in the Town Centre does a nice one called A&W I think it was and used aged Vanilla but only store I know that sells it and its a quid a can.

Leaving the 100 plus symptoms of Fibromyalgia alone there is of course my newly diagnosed, still do not know what it is, right knee problem.

Leaving that alone there is the pain in my right groin which aches as it did today and probably because everything else was having a good day due to the pills.

Then there is the Hemorrhoids and as I pointed out I suspected a link between Varicose Veins, which is what Hemorrhoids are but no Doctor ever mentioned this! I have varicose veins on right leg been there over twenty years! Now I have one that cause the pain you get when your kicked in the gonads because that is where it is! The last year I have been catching myself a lot more often and thought I was getting clumsy?! Noticed it more recently and then noticed a lump too! Got moaned at because I FORGOT to mention it to the nurse at my new surgery! Doctors visit two days later and it turned out to be varicose veins once again that caused the lump! Go figure!

Then you can add to that severe heartburn that has you cease up wherever it strikes and if I am cycling I have to stop! You might see me cycle by using just one hand while the other rubs my chest as I contort my torso into all manner of shapes? If I have forgotten my ant-acids, I take PPI (Proton Pump Inhibitor in mornings), you may see me cursing and swearing to myself?! Lol.

A Proton Pump Inhibitor slows down the gland that makes stomach acid. Your not supposed to take them for very long but I have taken mine around twenty plus years!

I think that is all and the Plantar fasciitis pains go back thirteen years but clicking ankles, hip locking, back issues and go back much further and some of them over twenty years!

So you could say I spent over ten years asking a Doctor to deal with symptoms or just informing them of symptoms after the event on a number of occasions for over a decade and then bugging them about these symptoms on a regular basis for over another decade!

I am still having to bug them today!!

I really do pity anyone who has my symptoms and more and I would not really know how they had coped if they had these a long time. I think though mine were made worse by the constant inept Doctors I came into contact with and the not knowing? Over twenty years of symptoms and not knowing and then over ten years of driving them crazy and still not knowing, lol. It isa a long time to not know and plenty of time to des5tro

I often wondered how in the world I was going to get all these things diagnosed and dealt with when they were not dealing with the ones I had asked them to?! Little did I realize that 90% of them would be one and the same condition?!

Now some more quotes and links ...

Homeopathy and FMS As we have seen, FMS is a condition which can present in many different ways. Every patient with FMS has their own story, their own constellation of symptoms, their own trigger factors, their own way of coping with the illness. In this kind of situation, the homeo­pathic approach comes into its own, allowing for the individualisation of a remedy or medicine to match the fea­tures displayed by the patient.

LINK: http://www.britishhomeopathic.org/bha-charity/how-we-can-help/conditions-a-z/fibromyalgia/ 

THE PLANNING TO PERFECTIONS

I was having the same day as I was yesterday. I really could not believe it, though it has probably happened before on consecutive days but I just cannot recall it?

Today I was determined to go out and do...something! I had decided to go to the Town Centre and actually do some visual shopping before tomorrow when I get paid, not that I have a lot to spend. Also I always do these things just for something to do and yet never ever buy the things I checked out beforehand!

I still always manage to spend too much though, though I think much of this is down to the Royal Bank of Scotlands crap system and app on my phone. I dare say that knowing the banks they are all like this?! I can look at my balance a day after purchasing something and not realise that the purchase the day before has not been taken out, giving me a false amount.

I have always told the bank staff at the HQ that this is just stupid and that the networking and technology is there to make these things happen immediately! They always seem to have blank looks but as this is mostly by email and at odd times phone I just get this pregnant pause.

So I have no get up and go again as far as my body is concerned but yet again my mind is working at a different speed! Well at least parts of it are?! In fact since I have realised my problem is down to scrambled brain signals I have started to analyse this and come to the conclusion that parts of my brain seem to work at different speeds. I have stated before that it feels like a battle between my mind and my body but when you think about it all of it is to do with the brain!

So in my mind my conscious mind and the section that needs that 'entertainment' is doing a thousand miles per hour. The other parts seem to go at five hundred miles an hour at the best of times and so slow they are going backwards in time at other times!

I am extremely interested to know exactly why this is, well if they actually know that is?! It may turn out that in my analysiation of my own condition I may discover things for myself whereby some of which my not be known to science. After all each person of intellect will have their own view and way of looking at things. Mine seems to be rather unique and that as I mentioned in that last acrhitects part my thought processes and problem solving part of my mind has had the tendencies to go into a kind of turboed mode! This is not all the time though ond anyone I know will tell you that there are also times that what appears to be the simplest things simply escape me. For instance I have liekly stated on here in the past that with computers provided I am focused and not distracted my stressful things I can do almost anything. Yet in a friends store, and any friends that have had stores in the past, present me with an electronic till and I am simply lost, yet I can almost always know what the 'No Sale' button is and I know that this opens the till! Lol!

But the neuro pathways that run from different parts of the body to the brain moust be in the thousands at least, possibly millions of pathways if you factor in that one thing has to go to all parts of the body and there are many different things those myriads of starnds have to deal with? So if you think of this is in the terms of the lottery and the number of possible combinations out of just 49 numbers, in the UK lottery, and the chances are a little under 14 Billion to one, then think of these millions of strands. There may be a set core of things that are always affected, only possibly, and then there could be any number of combinations frm the rest? It may affect one type of neural pathway but to all or only one of each?!

Bearing in mind that we have the normal five senses of touch, taste, sight, smell....and err the other one, lol. Then there are the fact that skin, glands, organs, muscles (along with tendons and ligaments) and many others are all connected via this. Or in other words there are the pathways we are not consiously aware of, well at least until something goes wrong and a symptom develops, if there is indeed one, before we know it is there.

This is a good way to state that when we experience symptoms it is our bodies way of telling our brain and therefore our consious mind that something is wrong! This inevitably means that we should stop doing it! At the end of the day this is what the messsages mean! I suppose that the idea being that if we rest the illness or injury can cure itself but we know that this is not always possible. When of course this is not possible then our habits change to deal with this nea ailment and we endeavour to find a way to work around it to survive. As this is supposed to be the 21^st century we look for modern ways to kill the pain or feeling of illness via drugs.

Now quite unforunately a humungous amount of health professionals seem to have either forgotten this or are ignoring this for their own personal gain or survival!!

I do mean that in no uncertain terms. Unfortunately the truth is difficult to deal with and I am well aware of that. But despite the opoosing thoughts many might have the facts remain the same I am afraid. So you could argue that the profession of health has become vampiric in nature. They are feeding of the injuries and illnesses of others, masquerading as people who can cure all ills or stop all pains either permanantly of temporarily until a proper diagnosis and drug is found.

Which is also why I now find it weird that the refusal of the approval of drugs already in use for other ailments wven when they are similar or not even as bad as the ailment they have been refused for?!

In fact I find the reasoning to be completely contradictory to the very nature of drugs!

A great many drugs do have an effect on the mind and there are many drugs given in any quantity will have an effect on the mind. These drugs ARE avaialable whether they are approved or not and this IS he age of the Internet.

Or to put it another way if I had the money I would be now scouring for a supplier of Sodium oxybate, make no mistake about it. I would not care as to its expense provided I could afford it without starving myself to death that is or sacrificing too much of anything else?!

I could even now state that this is indeed one of the goals of using Google and their Adsense was that once I had managed to diagnose my condition, whether I had cornered the NHS into diagnosing or diagnosing it for myself. After all it became bloody obvious a long time ago that the NHS were going to wriggle like proverbial worms to NOT diagnose what I was affected by and this much is obvious due to the number of avenues I went down only to reach a dead end!

All this was proved on the recording I made when I put my last GP into a corner and he stated “some people go there whole lives not knowing what their causes their pain”?! This statement simply dumbfounded me!

I mean I had known for sometime what was really going on but when he stated this to me I was simply stunned momentarily. For me hearing this was far, far greater an admission that my previous GP closing her practise down and taking my privately paid for x-rays with her! This is because that not only was there no interest whatsoever in wanting to know themselves, whereas I myself am curious and I think I have proved that now, but also this was done in a laid back fashion and he and others simply had no way of knowing just how disabled I would get and of course the ultimate question, would this be fatal?!

I would have been happy to simply have had an understanding as to how diffucult my condition is to live with and how long I have lived with it before it became sould destroying. But unfortunately I never got that instead I did get some false accusations and even a show of annoyance as they could not ascertain what it was. Well is that not down to the specialists that YOU send me to?!

Morons! LMAO!

At the end of the day I do not know how long someone in the NHS has known but I do know that they have known. They crtainly knew before I discovered it for myself and was proved by way of the two drugs handed to me in succession that were the first to have an effect! I man I was so annoyed I was given Amitriptyline that I was convinced I had them for giving me the wrong drug that will not work! After all it had been 13 years of asking before I was given the one that I had just stopped taking, Gabapentin. Amitriptyline is not the same drug at all as the first is a neurological drug and the second an anti-depresant. Odd too that all the times that I had been given anti-depressants I was never given Amitriptyline! Well I say that but maybe I had as I was sure the drug was an anit-depressant when he stated he was going to prescribe it?! Maybe that was a period in my life where I become a bit more active and made people think I was making it up?!

At the end of all this there will be a number of changes that I seek and one of those is an end to the hell on Earth that is my life and has been my life for quite some time. I have been working towards this using a multitude of avenues and some of those were postponed and some fell by the wayside. Only in the last few years I have endeavoured to polan to perfection and often when I do that, albiet in a much smaller scale, it ends up paying off better than I could have hoped!

Now that I have stated that for all eyes to be forewarned I can now show those others of you interested of the following two scanned documents.

These are of the receipt of the PHSO receiving my signed form, though curiously it does not state as much despite them making a big thing about me having to sign the darned thing before 'we can investigate'.

The following two are two pages from the letter from the NHS to tell me I have had an appointment made with Guy's Hospital, though this has since been changed by me! Lol! I mean look at the time?! 9.20AM for someone whose condition is to do with not getting the proper sleep even when I do get any?! Anyone would think they are already providing me with Sodium oxybate?!

Also even funnier is that fact that had I lived up the road from the hospital there was only a 50/50 chance of getting there at that time and I am being generous there!

But I am outside North London, technically, in Enfield and both Guy's and St Thomas' Hospitals are in South London?! I had considered going down there on a night bus, if there was one, and sleeping on a park bench, if I could find one?! Or indeed the hsopital?! Hmm idiot, I never thought of that!

THE EXTREMES OF EFFORT

I am having an odd moment. Though odd is the wrong word as these moments I have often but that which is odd is that I do not seem to have full control of some bodily functions!

It is a little like those times I refered to whereby I fall sleep in the afternoons yet beyong aabout 3 or 4 years back this would never occur in a million years. Never. Oddly my grandmother went through the ecat same thing and yet just like me she started to nod off in the daytime and while living there I found this odd. Because it was so unlike her. So you can imagine the similarities I would draw when it started to happen to me?! Only my grandmother was late 60s when this started and with me it was early 40s.

Then there are the times that I have now. I wake up and I am well aware it is late and yet I do not seem to be able to get into motion. It is not quite like the times, luckily only a couple, when it appeared me legs were no longer under my control and it took all my effort just to stand upright. But still getting moving seems to require enormous effort?!

I did manage to get downstors and I am currently sitting here, dressed and yet I am ready to leave the house and cannot got motivated. I have no idea what I wantr to do nor of anywhere to go! Yet I need milk and am paranoid about getting out in case my sleep tonight becomes...difficult! I am also bored which you would think that this alone would place a rocket up my rear but, no. I have also been annoyed as I have been leaving the house and forgetting many things. Like on the bike I forgot to take cycle lights, twice! I forgot my phone a couple days ago, nicotine gum a few times and the usual of having devices fully charged, though now I do not use that crap old phone its not so much of a problem as my new one has enough juice to easily last the day!

So I decided to type this out to try and break up the monotony of what I am going through, which appears to be nothing and that is what bugs me about these times. The annoying part is once I get out and decided whether to go on foot or my bike this feeling goes. It is like being stuck in a groove and you have trouble finding a way to get out of it. A bit like when Bill Paxton and Helen Hunt in the early part of the film Twister and they cannot get out of the ditch they are in with their truck and desert the truck to take refuge under a small bridge from the oncoming Tornado which then lifts the truck up and drops it slap bang in the middle of the road to the suprise of Helen Hunts crew, which included the late Philip Seymour Hoffman?

Now that I have now typed out a description of one of these impossible moments while listening to Deep Purple's greatest hits. Oh one of which is oddly used in Twister lol, I am now going to post this and get out!! I am totally buggered without milk and the sun is now shining and want to make the most of it while it is here.

Oddly I was loking up Fibromyalgia and Sodium oxybate before I typed this and discovered that narcolepsy seems to describe the sudden need, or very strong urge to be precise, to fall asleep which I can do anywhere in the house but often on the sofa! I also found something that seemed to also describe the loss of muscular function but cannot recall what it was called now?!

Typical! Lol!

THE FIBROMYALGIA SHORT VERSION

EDIT: I just noticed that yet again a number of posts have not bloody POSTED and added to this my keywords have all gone missing too!! Google at its most incompetent best or a didgy tablet PC?!

FIBROMYALGIA ASSOCIATION UK BOOKLET (15 Pages)

Despite being a UK booklet and association it is written by an American Doctor!

PAGE 2

Fibromyalgia is a common illness. In fact it is more common than rheumatoid arthritis and can be more painful.

Condition cannot be identified using standard laboratory tests, or x-rays. (But I believe the cause could be identified in x-rays.)

PAGE 3

Causes can be car accident (had two) and viral infection (had one of these years ago too which left me with problems with ears and throat)

Pharmacological  management of Fibromyalgia in the UK often involves 'off-label' medications focused on the relief of symptoms rather than a treatment of the condition.

Many people find available medications either insufficient, or difficult to tolerate due to high incidence of adverse effects.

PAGE 3

Start of section on exercise.

PAGE 4

Starts section on Welfare Benefits and covers DLA and PIP. Obviously written by English people.

PAGE 5

Still under welfare benefits mentions states that you should refuse to do things that cause pain and this includes turning up for the assessment.

PAGE 6

One of the most frequent comments we hear from people with Fibromyalgia is, "The government does not recognise Fibromyalgia."

This is not true both the DWP and the Health Department have starred that they recognise it. (Umm no I do not think so! They inhabit did not really think that statement through did they now? Sounds like something the DWP or NHS would say when someone like me accuses then of what they have done and his the condition from me out refuse to diagnose it?!)

FOR THOSE WHO CARE

It can be difficult to live with and care for a person living with a chronic condition like Fibromyalgia but you need not core alone. Fibromyalgia Association UK not only cares about those diagnosed with Fibromyalgia, but also cares about you, the people who live with and look after us.

Section called 'We Look So Well' (yup applies to a number of idiots)

In view of the constantly changing levels and sites of pain you may have thought that the person troubled with Fibromyalgia was going mad or just being idle.

Don't feel guilty if you have because we have wondered the same things about ourselves. How can we LOOK so well and fell so bad?

It is often referred to add the invisible condition or the irritable everything because there are no visible signs, but inside we are hurting and our self esteem may be very low. We may Ferrell we are letting everyone down.

Try to talk about these conditions (are you having a laugh?) and learn to recognise mood swings.

PAGE 10

Two sections on 'We Have Our Bad Days' and 'Making The Most Of A Good Day'

You may have noticed that a person with Fibromyalgia become easily confused and has shirt term memory blanks, perhaps forgetting a birthday or anniversary, getting words mixed up our missing them out altogether sometimes stopping in the middle of a sentence completely forgetting what was being said. These symptoms are often more distressing than the pain or the fatigue.

1. Writing can sometimes be difficult the use of a computer can assist

2. Art and Crafts can ease tension

3. Keep a good SUPPLY OF BOOKS AND ANYTHING ELSE THAT WILL ENTERTAIN!!

4. Encourage the learning of new skills. Change can be very rewarding.

What are the tasks sufferers find most difficult?

1. Carrying a shopping bag

2. Inaccessible items (impossible in my house but I started my house was WRONG)

3. Avoid excessive reaching

4. Keep floor area clear to prevent tripping

Family and friends can help a great deal in the  management of Fibromyalgia (LMAO) by learning as much as possible about the condition?! (I had one on the phone recently that STILL QUESTIONED that I had it and obviously has not read a damn thing about it in FOUR MONTHS!! But still thinks they can say what they like and advise because having a job blesses you with wisdom and intelligence no doubt?)

Section titled 'It's Good To Talk' 

(..and have quite obviously NEVER meet a family like mine!! In fact one of the reasons I am typing this out is despite the good books being 60 pages long and this booklet being 15 pages long and this blog being here 18 months I have put this here to use the keyword ' Fibromyalgia Twitter Version' to tell anyone I need to to search for that term on my blog and they will find this version!! Just over TWO PAGES LONGl!)

Bearing in mind I diagnosed my condition somewhere between my last GP  appointment with was June or July 2013 and owned several books on Fibromyalgia by my first appointment with my current Doctor, 4th December 2013, so diagnosed it at least for months ago but likely 5 months ago I can point then to this page when I get the 'attitude' in future from any of them?!

The funny thing is that I NEVER go to them, I have been nagged and moaned at about that since time in memorial, and they extremely stately come to me. So I see most of them once a year possibly, maybe twice with some that does not involve a family function. The only one I do see more often had spent the last dozen years telling me about all their different things and local people duck for cover when they are seen coming up the road. One woman turned to another and said 'quick let's go, if we get caught here we won't get away and we will have to endure a life history'

It is sad, but true. Everything has to be worse with them. I have been checking the latest thing I have been told about but it does not sound all that terrible and many times no symptoms. But if I copied and pasted the text message on here you would be forgiven for thinking that terminal cancer was suspected, let alone diagnosed! So really I prefer to stay on my own and deal with out myself as the only one that visits me probably does so because of guilt that I have never had attention not hero while they have had people bend over backwards repeatedly for them!

In fact if there was ever w family argument about support I would simply ask those involved to just the things that the two of us have had done for each of us.

Theirs would have dozens of things in the last 7 years.

Mine would have one! That was from about teen years ago. There could be things on the list but they were never things I needed not asked for. In fact the only one that is on my mind I specifically text them immediately stating I did not want it and did my Orchids alloy of damage!

But your not supposed to concern yourself with and of that, they did something for you and therefore you should be on your knees for the rest of your miserable life because they ate the only ones that do it!!

What I can never figure out is why they do the things for you that they think you should do or think you should have?! They never listen to what you actually say you want our you need! EVER!

Yet they have fallen out with so many people close to them it is unbelievable to imagine how they cannot see the reason?! One even emigrating to Australia after falling out the last time and no contact has been heard from since! In fact they stated to me the same thing that not only did many of us know but that which the person guilty of doing complains that no one else does!

Listening! But they are actually the worst individual in the world for listening to anyone else and if you mention it all you get are excuses that do not wash. Yet I have medical excuses and they are merely batted to one side as insignificant.

I would rather throw myself of Tower Bridge in London than be like that?! I have had my condition to the point of affecting my life for thirteen years and have had many symptoms a lot longer.

Yet I have NEVER gone after sympathy and only twice ever asked for help, which I failed to get each time. In fact I have one mate who likes to have a home because he knows how self centred one family member is and I always take a few seconds to pick up on what he is jibing at. He says 'Have you got your shoes yet?' Which has been a joke now for a year.

Hmm ... maybe ... even ... longer?!

THE NEVER ENDING NARCISSISM

As always I am having some difficulties with the run up to Christmas.

As per usual people want me to perform tasks that I either cannot do or cannot do and will make me groggy, dizzy and sick feeling for most of Christmas Day.

This means that as well as not listening certain people have been incapable of not reading either and I do not mean this blog either.

The problem that people face today is that everyone, or almost everyone, carries something with then that is not used anywhere near half its potential, the smartphone. As those who have followed and paid attention they have already refused that I have done things with phones, one and sometimes more, with phones most people, outside of computer geeks, could not dream up. To great effect to at times even if no one in authority wants to admit to their existence and source for whatever reason. Yet among my friends and family I was unusually very late to the smartphone party. Very late. Yet despite this most use their phone for the obvious things and so obviously only appear nothing more than a fashion accessory. Some are not even familiar with the choices within settings despite being on the fourth smartphone. But none of this matters. What does, however, is the fact that in the last few weeks it is that very app used mitre than anything else that they have failed to use. Indeed every smartphone is built around one single solitary thing in ever smarter ways. SEARCHING.

These days many of the latest phones can search using voice alone and even touching the screen is slowly going being edged out in favour of gesturing, which I think is much better provided it is implemented skilfully. Unfortunately their are too many cooks about and the food is often rancid to begin with.

What I am ever so slowly getting at is that everyone loves to search, of Google as some still call it. It is right there in their pocket and within arms reach 95% of the time but the only thing I glean from things that people say our do is that they have failed to do this. In my regards at any rate.

This would not otherwise bother me but when suddenly things are expected of me that are clearly either impossible or detrimental then I will get annoyed. That is with anyone related to me.

Then consider a bunch of people who are not only not related to me but their sole purpose and reason for their salaries is to help and support people like me? My next post will explain that at the very beginning of the year I am going to set a number of things in motion. These will be with organisations I have dealt with before and there to help people like me as I already said. In so doing I will prove beyond a shadow of a doubt that all previous correspondence I was being honest and that I am weeks away from rubber stamping this with an official stamp. Though I do not need to, now. I have the condition and the years of letters regarding the symptoms. Disregarding this now they will no doubt realise make then look utterly guilty of their lies, trucks and acts of inhumanity against the British public. What they do not know is that I have already done exactly that, but rest assured I will declare this blog to them in mid battle because this can sometimes force the most hilarious actions and statements. Even if it is at the expense of dumb front line staff or on occasion my own.

In fact while I was typing this out I ended up being asked by three people. Now what is expected of me is a short list of things. But first of I should state that my recent prescription of Amitriptyline has list it's effect as i stated recently and that the returning pain had been quite bad and wise than it was previously. I think I now why because while the pain had receded I was capitalising on this.

I should have foreseen that as nothing lasts forever and I am used to just not being that lucky.

Now another problem I have is the sleeping thing which is in itself complicated...

I have trouble sleeping, both getting to sleep and at times starting asleep. I also trend to wait up with a full and painful bladder which now send to have garnered the attention of my newest GP. If not treated carefully I can go without much sleep which will then make many of my symptoms worse.

Now as they are currently worse than they have even been I am a little more wary about my condition than I normally am.

But I am expected to go off and just spend my Christmas period sleeping in places that do not have enough beds with the living room sofa permanently occupied?!

Now made the above points very clear. I have also made it very clear that I have now pinpointed and certain of what I am afflicted with. I also prove it on this blog.

Now bearing in mind that today is Christmas Eve (2013 in case this is read years later by fellow Fibromyalgia sufferers) and we have the worst weather in many years leading at my house. It had been torrential rain since I woke up, annoyingly late I might add. There had also been a very strong wind whipping around all day making the rain sound like gravel against my house.

So imagine how annoying it is when I just notice a text message starting can I travel to someones house, two buses, as picking me up tomorrow would be too much?!

I wonder if a Fibromyalgia Society might contact me with the offer of emailing my family and knocking them on the head with the proverbial brick to try and get the message home to them?

I have to admit that the lines coming from that one get more and more bizarre with each year that passes and only their own realities seen to matter at all.

Had any one of them taken the time to actually read my last few posts or anything on Fibromyalgia, you can download books from Amazon, Kobo or iTunes for like £1.50 odd, they would realise not only everything I have ever did was true and that I cannot do these things they expect if me midst of the time. When I say I can't it means I can't, it does not mean I can really do cartwheels, it means I BLOODY WELL CAN'T.

Jesus Christ I would NEVER rely on them as witnesses I can tell you, three are so bloody astringent, annoying and self obsessed that I tell you I will get through the whole of 2014 without a single word or text about what I have just posted here?!

Bearing in mind that the one complaining they cannot pick Mr up dies not drive, Lol. One lives 5 minutes away and does drive. One lives half way between me and my destination tomorrow and also drives. My destination is a twenty minute drive.

Well I say my destination... but I am quite happy to stay hear but this is because sometimes Luke's to be centre of attention and all their health problems are far greater than anyone else's.

I would never say that but when I am nagged to do things that are being my capability, or will cause me a lot of pain or make me feel like shot for 24 to 48 hours I end up writing chapter and verse. If someone insinuates there's is just as bad or worse I will repeat the chatters and verses.

Indeed just a few nights ago I was reading out lines from a book after hearing about their condition for the umpteenth time.

Now remember I am reading from a book! A book I have on my tablet and had been there several days. I am reading it because I have just had things stated to me about me doing this I should when I have spent YEARS telling them I simply cannot. Now I can actually read from a series of books and weird for weird exactly how I described things for many a year. I read how I need more money than the average person and need help just to get through the day. I then said about how you cannot tell when your over doing it and should not do to much. I also said that you should not do to little either and even explained why I used to exercise as I felt better. Now I am reading this out from a book and could read it out from several. So try to work out the reaction I got from reading this when they said...

"Well I am not supposed to do anything with my epilepsy but I do!"

Which basically means i should completely ignore signals from my body for thirteen years as well as that of the top experts who have written down the facts in books. No you should just do what is expected of you, from someone who used to call the government fascist slave drivers?! Lol!

For some bloody reason the others will bow to this person and I will get messages asking to to perform somersaults?!

I would dearly love to get into a group of people who have had similar things but I have to admit they would need to be related to someone equally as narcissistic as my particular family member and that would be hard to find and if I did.., oooh I would feel so sorry for you, I really would. LOL.

Anyway to the question of doing somersaults I simply answered with one word with one upper case letter and one lower case letter. No exclamation marks, no sarcastic comments or anything else just that one word. They shed a question and the true and simple answer is, No.

But it will likely turn into something now and there will be some things said because I cannot do these somersaults? Guarantee it and this has been happening for years and will do for the next year too. It will cause conversations a plenty that will go on for his and trustfully over many months. There will be text messages about it all and some bad words said to and maybe even arguments.

Minutes, hours, weeks, months and years?!

All because they do not listen and cannot spend 30 minutes reading a book?